When I was diagnosed, I was told that there was an approximately 3-month “honeymoon period.” Later, a different doctor told me that type 1 diabetics can still be producing small amounts insulin well over a year after diagnosis. I don’t know what the current thinking is or what you were told, but, for what it’s worth, your son could be in a honeymoon period for a while yet.
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See! Solving problems already!
It is really hard to get all of the stuff sorted out. And as soon as you think you have it solved, something changes. But it sounds like you are on the right track to figure things out for your son and your family.
I think my partner had 11+ years with T1D before we found FUD and we’ve learned 600x more stuff here in a year and a half than we ever learned from one of our 8 endocrinologists/CDE’s (certified diabetic educators – they work in the Endo office helping T1 patients and have prescribing powers and more time to discuss diet, pump settings, exercise, and so on). Not to be down on doctors, but there is so much to learn from people who have been living with diabetes here at FUD. I’m glad you’ve found us.
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My son Liam is just leaving the honeymoon stage after 3 years. This is widely different for every diabetic.
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Out of curiosity, do you even hyperfocus on the honeymoon thing? Or do you just try to deal with Liam’s blood sugar on the day-to-day?
No. We have found sugar surfing to be a very effective method for us since there are so many variables that are here one day and gone the next. We treat the moment.
Even though his TDD is now over ten on average, I still find that I have to suspend basal 2/3 or the entire night at least three days a week. So, he still hasn’t exited completely.
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Interesting. I had a feeling, because you don’t mention honeymoon very often.
And for new folks out there, @ClaudnDaye is referring to the technique covered in this book:
Which I haven’t read.
I had heard that you could get a copy for free if you were newly diagnosed. I don’t know if that is true or not. Some of the principles are covered on the website.
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And then you begin to hate those alarms and learn very quickly which ones to ignore and which ones are the signs for worst to come.
Looking at the graph, the one concerning issue was the downward trend, preceding that low. And the puzzling moment when that low rebounded within 5 minutes and stayed in acceptable range for another 6-7 readings before it dropped again and then almost 3 hours before it dropped again. These look like “faulty readings” to me or pressure drops if you look at the whole frame at once. Looking at them while it is happening is a bit more difficult That is why you always double check those numbers. People have the tendency to get back to the same spots of curled up sleep position, almost a short-term muscle memory. With all those normal readings in-between, those lows seem to be the ones you can ignore. But the moment your son complaints about anything else, in particular being cold or sweaty, those readings become more serious and need closer monitoring. There could be a really severe low on the way which the body averted at first with releasing stored glucagon for an emergency. This usually needs about 24 hours to replenish.
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Consider getting SugarMate (sugarmate.io). This has been amazing for us in waking up because you can get an actual phone call (that won’t shut up until you pick it up), for potential lows. I have been alarm deaf for a while now, but the phone call wakes me up every time.
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Thank you. I have Sugarmate in my menu bar, but didn’t know about the calls feature. Good to know. I’m the same with most alarms, which is why I usually set key alarms to the same sound as my normal ringtone. Somehow we get trained over time to be particularly alert to that sound, whatever it is.
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You need to have an iPhone for the app, which allows you to configure the phone call.
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@ianrobertdouglas, on the computer I can see your curve much better. To me, both events appear to be pressure lows. The first may have been progressive (maybe not too much pressure early on etc.), the second brief. They don’t quite look like our typical pressure lows but they are very similar.
For us, a pressure low is an easy event to recognize. It often happens when there is little IOB and few carbs to be digested. Without IOB, you are unlikely to see super sharp drops, which these pressure lows often are. If I have any reason whatsoever to suspect a pressure low, I just fingerstick. There have been nights when I end up doing 4 fingersticks because of 4 suspected pressure low events. It is easy to give too many carbs, of course, in that case, since really the child needs no carbs at all 
This is the kind of event that you really don’t feel like getting up for the 3rd or 4th time! But, of course, we always need to make sure, in the unlikely case that it is really a low.
FYI, my son was diagnosed at age 11, and his honeymoon lasted about 9 months. Honeymoons become longer with age at diagnosis, and some LADAs have several years of honeymoon, whereas children diagnosed very early sometimes only have a couple of weeks of honeymoon. But there is not a perfect one-to-one relationship between length of honeymoon and diagnosis age: there are many exceptions to the rule. On the whole, however, it seems to hold pretty well.
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Thank you so much, Michel.
Not least one of the things that pricked up my ears in this episode is that I woke at almost the exact time it was happening. I’ve had similar occurrences happen before. For example, 25 years ago, having been awake for near 60hrs, I was on a train heading somewhere in north London and fell dead asleep. I woke with the doors open at the stop I was supposed to get off at.
Still, I’m glad to know it was likely a pressure low. I feel I need much more experience yet before facing a real low.
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Firstly you seem to be doing really well managing your son using CGM and nightscout. TiR and average look great.
My daughter (3yo) has had 3 nighttime pressure lows that I have noticed. They do not really look like this, they were usually fairly stable around 100 and then shot down to 68 or 57 as far as I remember.
In your chart there seems to be a good drop at 23:00, 00:00, 02:00 and again at 03:00. This seems suspicious to me – pressure drops exactly on the hour? My daughter takes Humalog through the omnipod and she tends to drop on the half hour 00:30, 01:30 etc. Her basal changes starts at :00 (never :30)
In your chart below it is difficult to see but it seems there is a very significant drop off at 21:00 or 22:00? If you gave a large bolus dose of Humalog at this time 20% of the dose may kick in 4-5hours later – I have observed this many times. If I give a bolus >0.2 at 10pm or later I reduce the corresponding basal.
One other thing for you to consider – glucose gel works much faster than milk or juice and the CGM doesn’t get as confused/stuck in 40’s/50’s. I use Dex4 or Trancend – see recommendations below. I usually weigh out 3g small spoon or put the gel in a syringe for night time.
http://main.diabetes.org/dforg/pdfs/2017/2017-cg-blood-glucose-products.pdf
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Thank you so much for the response.
We’re very much still in a fluid period of learning. Juno (my son) reacts unpredictably. The CGM is really helping, and I’m experimenting a little (of course observing him all of the time).
We had quite a few instances of sharp drops on prescribed boluses, so I cut doses from 7 units to 3 in most instances. Even 2. It felt like we were feeding the insulin, which is not the goal. Interestingly, his numbers are much more stable and predictable on lower doses. Flat arrows between meals, and even climbs on eating appear not as steep. Today we’ve been riding high and doing 1 unit corrections if necessary. I want to observe him under varied conditions.
Sooner rather than later I’m hoping to get Juno on the Omnipod, so I can micro-bolus. He seems very insulin sensitive. The night before last, one unit of Apidra brought him down 120 mg/dl.
Unfortunately, the Omnipod is not available where I live (Cairo, Egypt), so I need to do some logical juggling. Same for the glucose gel. Not even glucose tablets exist here. I only managed to get a glucagon shot because a new friend had one spare that she had brought from France. Otherwise, also unavailable.
Juno is on Apidra for boluses and Lantus (17 units) for basal.
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With practice you will become an expert in dosing based on BG, trend and changes in trend, exercise, fatigue, kinds of meals, and all sorts of other factors. The notion of “prescribed boluses” will become irrelevant and inapplicable. I’m pleased to see that you have already recognized this.
Pretty much any pump will enable this. And it is also possible on MDI to approximate doses to 1/4 unit if you use a syringe and vial: just draw up the plunger to somewhere between the lines. I did that for 8 years. Unfortunately, insulin pens don’t give this flexibility.
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Yes, indeed. Medtronic is available here, though I’m not sure what exact models. I’ll be keeping my eye open locally for loopable ones, just as you can find classic arcade games from the 1980s.
But for the time being, and at the beginning for us especially (Juno was diagnosed 12 January), I’m focused on the Omnipod mainly for the discreet form factor. Juno is handling all this as if it were nothing, which is great, and admirable. Kids are amazing. But I’d still like to give him as little to worry about as possible. I have in mind the infusion sets on other pumps. He’s a young kid. I want him to run and jump just like other kids. Of course there are methods to bodily secure other pumps. But the Omnipod does seem particularly ideal for children.
Juno is involved completely in the learning. We discuss dosing, his levels, his graphs. I want to develop his consciousness of all the elements, so in time he can instinctively feel where he is and what is right. I know the t:Slim is superior in terms of onboard algorithmic protections, and the real game-changer will be the dual hormone iLet of Beta Bionics. Until then, I hope the Omnipod will prove good and useful. and relatively non-invasive.
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This may well never come. Right now it is vaporware
I’m certain you have more information than me, but I had read that final clinical trials of the dual pump will happen late this year, with FDA approval 12-24 months later, all things being equal.
That could be never 
We are all hoping but… A lot of companies have gone that way and never come out with anything. Clinical trials and FDA approval are very high hurdles and very costly. And—if they come out, they are not always successful products. The newer Medtronic pumps have great specs but are, in my opinion, poorly designed products.
Unfortunately, as long as a product is on paper it always looks great I keep a healty amount of cynicism until I see a product out on the market. Particularly a medical product, where hurdles are much higher.
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Since you don’t have glucose gel, look for a bottle of corn syrup. Corn syrup is just about pure glucose in liquid form, and is probably available in Egypt? Here in the US we need to buy check that we are buying corn syrup instead of high-fructose-corn-syrup (since both are sold here).
And you may have glucose candies if you can’t get the tablets. Check the labels in the candy aisle in your grocery stores. Here in the US we have “Smarties” that are pure glucose and which I carry instead of glucose tablets, but “Smarties” are a different candy in Europe I believe so label checking is required.
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